He would have died. About 4 weeks ago, my 74 year old father-in-law, “Pops” was admitted to a small community hospital for delirium and worsening congestive heart failure. He was seen by a caring hospitalist and a local cardiologist who was deemed good by all the locals, but they could not get him better.

When diuretics were increased, his blood pressure plummeted; his renal function was impaired; his liver enzymes were rising; inotropic agents were started, and his cardiac medications were adjusted but to no avail. Finally, after 2 weeks in the hospital, the doctors approached us with the dreaded talk, “We think he should go home on hospice. There is nothing more we can do.”

Despite the delirium, Pops pleaded he wanted to live to see my 8 year old son graduate high school. My husband who is an internist respected the other doctors’ decision and did not want to interfere with his dad’s medical care. With tears in his eyes, he whispered, “I wish we could do more.” My heart was heavy as I did not want to go against my in-law’s wishes to get a second opinion.

Every fiber in my being, though, screamed we should not just accept the decision; I did not feel that he received a full evaluation into the cause of his heart failure; the doctors were just trying to “fix” the heart failure without understanding the why.

Trying to make the right decision, I talked to my colleagues, I talked to my patients, and I talked to my own family: what should I do? Go against my in-law’s wishes and transfer him to Dallas for a full evaluation or be complicit in the Do Not Resuscitate (DNR) Order. My practice partner clinched the decision for me. “DNRs make people lazy. “ Many of you know Jack Cush; he does not mince words.

Working rapidly, I finally was able to convince my in-laws to transfer Pops to the hospital where I have privileges. So many “what if’s” were posed: What if no heart failure specialist would accept his care? What if there are no hospital beds? What if he dies en route (I would have been known as the one who killed dad)? What if there is no ambulance that can transfer him that far? What if the doctors can’t help him in Dallas? I pushed aside those fears. Saying a quick prayer, I contacted the hospital and my colleagues. The transfer happened; there were no barriers.

Within 10 min of arriving, a heart failure specialist, evaluated and diagnosed Pop’s heart failure as tachycardia induced cardiomyopathy related to frequent, intermittent atrial fibrillation with rapid ventricular response. In fact, when his pacemaker was interrogated; it showed he had been averaging 150 beats per minute for more than 2 months. He underwent cardioversion with immediate improvement in his symptoms. His renal function improved, his liver enzymes normalized, and his delirium resolved. He started to diurese without issues to his blood pressure, and last week, he went home.

The anger and guilt experienced by my husband and my in-laws were understandable. How many people died prematurely from that regional hospital? Many patients are not “lucky” enough to have family members who are physicians willing to help. Is a caring doctor a good doctor or a good enough doctor?

The doctors at the regional hospital seemed trustworthy; maybe, they just did not have the resources they needed; there was no heart failure specialist available at that hospital. Can we trust the regional hospital if he has to go there again? That hospital is the only one available to them in a rural community; the next one was more than 60 miles away.

Rural hospitals represent more than half of all hospitals in the United States, yet many are closing due to inadequate funding and having to service larger numbers of uninsured patients (www.hrsa.gov); patients in rural community struggle to get access to medical care (not just good medical care, but ANY medical care). In fact, my-in-laws’ community has only 1 rheumatologist and the next available appointment is greater than 9 months. Dr. Robert Jackson a rheumatologist who works with rural communities cited in an interview that the need for rural rheumatologists will continue to grow (https://www.the-rheumatologist.org/article/the-future-of-rural-rheumatology-a-discussion-with-dr-robert-jackson/). Forget about the window of opportunity for treating early rheumatoid arthritis.

The final question still bothers me, though. Do I believe that DNRs are for lazy people? Is it giving up—or is care futile? I have seen cases where there is no hope of recovery, and the cost of prolonging care is enormous. From a religious view, every life is sacred, but death is natural if allowed to exist.

The ethical debate of prolonging life vs. allowing for a “natural” death looms large in the media. So many court cases are published of “brain dead” victims’ families fighting against withdrawal of life support. I do talk to my older patients and their families regularly about end of life issues when the patients are stable and capable of deciding their own DNR status. The conversation is much harder when the decision has to be made under duress.

I have concluded that DNR orders are not for the lazy; actually, when done right, it takes a lot of time and effort; the best doctors to broach the subjects are the one who have good, long-term relationships with their patients. Obviously, “DNRs” can be a quick option when there are no other options for a rural area.

In my father-in-law’s case, I did not believe his care was optimized. I do not blame his doctors; I am critical of the lack of resources available to the rural communities. Reflecting on all that has happened with Pops, I think the doctors in the rural community did an honest thing; they said, “There is nothing more we can do.”

This opened the door to the possibility that maybe someone else can do more. As physicians, we deplore failure, and we tend to blame ourselves or, more often, blame the patients who do not improve despite our best efforts. I believe it is important to let patients know, “I have tried my best, there is nothing more I can do.” This absolves us and the patient from the guilt of transferring care to another provider who might be able to help.

At least for now, Pops is doing well, and my second grader does not have to accelerate his studies so he can graduate high school sooner for his grandfather.

Kathryn Dao, MD, FACP, FACR, is the Associate Professor of Internal Medicine, Division of Rheumatology at UT Southwestern Medical Center, Dallas, TX. She is actively involved in patient care and medical education. Her interests include rheumatoid arthritis, systemic lupus erythematosus, drug safety, and pregnancy in rheumatic diseases. Thoughts are her own and do not necessarily reflect the views of UT Southwestern. Follow her on twitter @KDAO2011.

Rheumatologists’ Comments

Thank you, Dr Dao, for this beautiful and personal essay.
You faced an issue we will all face with parents and siblings, or in my age group, our partners and our selves.
I am glad you had the courage to do the right thing and I am pleased that fortune was on your side with all the right tools at your hospital.
I worry often about my patients in rural areas and sometimes see that not enough resources are available to them. I have seen bad outcomes.
I am not sure of how will provide adequate rheumatology service to such communities let alone service in so many specialty areas.
I am glad to you did not just accept Jack's thoughts about DNR (wise as he is) but formed your own ideas.

Your very real world story (especially for a 72 year old guy like me) is greatly appreciated and a wake-up call. Even as "specialists", we can get lulled into the "same ol', same ol' " rut. Like the saying goes..."you see what you know" and in this case the attending cardiologist just saw another old man with chronic CHF!! CHF specialists can be hard to come by wherever you are, so I don't fault the attending cardiologist who may be overrun with the usual "vascular problems" and failing protoplasm associated with advanced age. As suggested, prolonging a poor quality of life for another 6 months while putting a patient through a "living autopsy" in a futile effort to prolong life, is undesirable. Nevertheless, thinking "outside the box" using critical thinking and intellectual honesty is our main defense against "same ol', same ol' thinking be it for CHF or vasculitis. To quote Jonathan Swift-"Vision is the ability to see what others do not."

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